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It’s the not knowing that eats away at you

Littlest is 4 months old – how can that possibly be?

So much has happened over these last few months that it seems like a lot longer than that – although I suppose that since I have been awake for more hours of the day than usual it has lasted longer than 4 months normally would

We find ourselves 3 months into the journey of learning to live with his venous malformations – a journey we never expected to be on and one that appears to come without a handbook or a map

What we do know is that it will never get any better – it will get progressively worse from this point onwards, the prognosis is that it cannot be cured, cannot be fixed and it will impact the rest of his life

But what we don’t know is immense

We don’t know how much pain he will suffer, only that he will have pain and it will need managing

We don’t know how much it will impact his life, only that it will impact it and that we will need to find ways to support him

We don’t know if he will be able to crawl, to walk, to run

We don’t know how different the legs will be in size, if he will need operations on his hip, knee and ankle, if the clotting disorder is going to be just a problem rather than A Big Problem

I just wish I had some idea what the future is going to hold for us – if I knew there would be some way to prepare ourselves for it rather than spending the whole time with a low level of anxiety that flares up into extreme worry from time to time (we’ve discovered we have to keep the leg really warm or the circulation to his toes falls away leaving them in a bad way)

I do know that we are going to have to deal with more people in the future looking at his leg and thinking it is horribly bruised and having to explain that birthmarks blanch, bruises don’t time and time again

I do know that he is going to be surrounded in love and all of us are going to fiercely protect him

But there is a little part of me when I see a perfect newborn baby is incredibly sad that my little baby isn’t perfect and I can’t make this better for him

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1 comment to It’s the not knowing that eats away at you

  • I’ve just been catching up with your blog – haven’t visited since just after Littlest was born. You’ve had a really bumpy ride. I hope you are still enjoying the high spots, though. That picture of him smiling is just to die for!!

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